Monday, May 09, 2011

Botox and Serial Casting

In March and April, Emily did a round of Botox and Serial Casting. When we met with our new physiatrist in December (she runs a CP Clinic at Children's), this was one of her recommendations for managing Emily's spasticity.

Before I share how all of this went, let me first explain a few things.

Spasticity is one of the unfortunate side effects with Cerebral Palsy. It causes some of Emily's muscles to be stiff and rigid. It mainly affects her legs. She points her toes like a ballerina ALL THE TIME. This is not a good thing. If she keeps her feet in the pointed position, over time the tendons in her heels will shorten making it impossible for her to flatten her foot. This would lead to surgery. We would like to avoid surgery, if at all possible.

Botox is recommended by some doctors to treat spasticity. The theory is that Botox, when injected into the muscle, keeps the nerve endings from constantly contracting. The constant contracting is thought to be a cause for the spastic muscles. It is not a permanent fix. It is only supposed to last 3 to 5 months.

When we met with the new doc in December she recommended that Emily receive the shots in her calves. We didn't end up doing the Botox shots until mid-March for a few reasons. The doc's office never called us to say that insurance gave the approval (we had to wait for the OK before scheduling). Then the doc cancelled one appointment. Then I moved two or three appointments (I have lost count at this point) because Emily was sick and then started having seizures the week of another appointment. So the process took a lot longer than originally planned.

Before the appointment, we had to buy a prescription numbing cream for Emily's legs. A couple of hours before the appointment, I had to rub it on and then cover it with Press and Seal wrap. That was an interesting process, but it worked nicely to keep the lotion on her legs and her pants from being ruined. Emily had to be on her tummy for her appointment and normally she hates that. She normally isn't too excited about needles either (she must get that from her mother). Emily handled the whole appointment like a champ! The doc came in and gave her the shots in no time flat. Emily didn't cry or fuss or anything. I am guessing the numbing cream really helped and the toys we used to distract her weren't a bad idea either.

One week later we began serial casting. Casting works similar to Emily's orthotics, only more intense. The purpose is to get her foot in the proper position and increase her range of motion. This is done by giving a gentle stretch each week to work towards getting her foot into a completely flat position. The process lasted 4-5 weeks. Each week, Emily would get a new cast that stretched her foot a bit more. She would wear the casts 24/7. I would remove the old one the day before our next appointment each week.

Here is Emily showing off her casts from week 1:

The process is much different than I expected. First, I didn't expect the casts to be HUGE. Second, I was amazed at how much time it took to put them on and take them off at home (there are a LOT of layers in there!). Third, I thought Emily would be miserable with the casts on.

Emily had to be on her belly for these appointments so that the therapists could make sure that her foot was in the proper position. Emily did OK at first, but each cast took 2 hours at that first appointment and a 3 year old only has so much patience. She was crying and trying to pull her foot away. We ended up sitting her up towards the end. As soon as we did, she was cool and calm and let them do whatever they needed to do.

We didn't know what to expect from Emily. We thought she wouldn't sleep well and she would whine and complain. That was not the case at all! I think Mike and I had a harder time adjusting than she did. The casts made her HEAVY. Getting her dressed and bathed were very challenging too. Adjusting all of her equipment to accommodate for the extra height was tricky too (especially since it changed each week).

Here she is hanging out with Dad during week 2:
We decided to have fun with the colors, so week 2 was pink. That turned out to be a bad choice since it got very dirty. Oh well! Emily actually fell asleep on her tummy during this appointment. I could not believe it! During week 2, we did not cast her left foot. Her heel was very red and the therapist was concerned about skin break down if she put a cast on it. So we left the cast off and she was only allowed to wear a shoe on that foot if she was in her stander (otherwise she wore a sock only).

Week 3, we decided to go with red and make it look like a Lady Bug:
This appointment was a little tricky. Emily had a complete meltdown during the casting process. She was very mad about being on her tummy. So we moved her to her wheelchair. She was much happier, but it make the therapists work a bit more challenging. Emily did actually get 2 casts that week, but we ended up removing the left one by day 3. Emily had managed to move her foot up in the cast and point her toe with it on. The therapist was completely amazed that she was able to do it. There are a lot of layers in those casts and they are put on pretty snug.

And here is week 4 (back to purple again since that is her favorite):
We didn't bother to cast the left foot this week. Once again, her heel looked really red and the therapist was concerned about skin break down if she was able to move around in the cast. As a matter of fact, we ended up taking the right cast off on day 3 this week also. Once Emily had figured our how to get her left toe pointed with the cast on, I guess it was only a matter of time before she would figure out how to do it with the right.

So, all in all, serial casting was not as successful as we had hoped. We did make some gains in Emily's range of motion, but we were hoping for more. During this process, we also ordered Emily some new orthotics. Her old ones had been adjusted so many times to accommodate for her pointing that they really weren't useful for keeping her foot in the proper position. The therapist did not want to lose the stretch that we had gained so we made sure that we ordered new orthotics and had them rushed so we could have them when we were done with casting. She also recommended night stretching AFO's. That would help to keep her feet in the proper position while she is sleeping.

I won't get into all of the details, but there have been some issues with the orthotics. The daytime AFO's were not set right. They gave her feet too much of a stretch and hurt her. The nighttime AFO's did not come in for a couple of weeks (apparently putting a rush on the order was only applied to the daytime). At this point, we have returned the daytime ones and they are being redone. So she is wearing the nighttime ones during the day. I am afraid that the small gains we did make with casting will be lost because of all the mishaps with her AFO's. It is frustrating!

I have a feeling our doc will want to do this again in the future and I am not looking forward to that. The casts really were a hassle! Plus, we did not get the results that we hoped for. That doesn't make me anxious to repeat the process.


Christie said...

Dawn, She looks SO grown up in the 2nd picture, in the standing position!!! What a process!! Don't you love that feeling--when you're bracing yourself for a total meltdown and it doesn't happen!! I hope the daytime set comes in soon and works out!!

Stephanie's Mommy Brain said...

LOVE the ladybug cast! So cute! Seems to me that Emily is part Houdini when it comes to getting things off her feet!!

Katy said...

I am so glad to read this post. I haven't mentioned it on my blog yet because I'm afraid of the backlash from my family but Charlie is scheduled to have botox done next week. We're not doing serial casting--just night splints to maintain a stretch, but I have been frantically worried about the injections themselves. Everyone has said that Charlie should be sedated for them, but our doc is like yours and just does the numbing cream.

I'm rambling, but am just trying to say that I am SO GLAD your appointment went well and that Emily was not miserable.

I'm also curious about how they chose the calves over the hamstrings. We have high tone in the legs as well and our doc is going with hamstrings only. He check ankles, but thought we were OK there.

Thanks for posting this--it was just what I needed to read.

Big brother, Little sister. said...

Dawn, I love how you had fun with the casts! I am glad that it worked out postively for all of you at this stage and hope it really can limit any surgery that they talk about ever! It is really scary sometimes to have to make these decisions and hope for the best. Much love to you and Emily xo

Ellen said...

Hello! A mutual friend just let me know we are leading parallel cp lives, re, casting and Botox. Max is getting Botox today, and then in a few weeks we'll do serial casting. I'm sorry it wasn't as effective as you'd hoped for Emily, but I guess some gain is better than none.

It is good to know about night stretching AFOs, I will speak with the physiatrist about that.

Let me just say, Emily sure does know how to rock a cast. I am going to show these pictures to Max, although our place was insistent he could not get them in purple (also his fave color).

Your Therapy Source Inc said...

Great post. It is very helpful for therapists to read this detailed account for pros and cons when the casts go home. Thanks for the insight. Margaret, pediatric PT

Anonymous said...

thank you for the blog. We are at the making a choice stage. Botox & serial casting or surgery. We have talked about both opinons. We are going with the surgery. We have heard from other parents who tried botox & went with surgery because the botox just didn't work. We don't want to put our little guy through that. Also don't want to put something like botox into our sons body. Thanks again for sharing your experience with us. Emmy